Tag Archives for Alzheimer’s Association

Last Wednesday evening, the US Senate overcame political gridlock by passing a 2019 fiscal “Minibus” spending bill that allocates funding for the Department of Defense; and Labor, Health and Human Services, Education, and Related Agencies (accounting for 65 percent of all discretionary spending). Within the Health and Human Services appropriation, the National Institutes of Health’s budget increased by $2 billion to $39.1 billion, a 5.4 percent increase over the agency’s current funding level.

The Labor, Health & Human Services, Education and Related Agencies Appropriations bill passed on Augusts 23 by a broad bipartisan vote of 85 to 7, the spending bill combining the Senate Appropriations Committee-passed FY 2019 Labor-HHS spending bill (S. 3158) with the text of the Senate committee-passed Defense spending bill (S. 3159). The Senate-passed appropriations bill, with both Rhode Island Senators supporting, adds an additional $425 million for Alzheimer’s research at the National Institutes of Health (NIH) for a total of $2.3 billion. The increases in Alzheimer’s funding surpasses the $2 billion research goal of the National Plan to Address Alzheimer’s Disease. If signed into law, this would mark the fourth consecutive year of historic action by the U.S. Congress to address the growing Alzheimer’s epidemic through funding research.

As to other NIH health initiatives, the 2019 fiscal spending bill also allocated $429.4 million for the BRAIN initiative to map the human brain, (a $29 million increase), and $376 million for the All of Us precision medicine study, this was $86 million more than in FY 2018.

The Senate Labor, Health and Services, and Education appropriations subcommittee first recommended the Alzheimer’s funding increases in June, with the full Senate appropriations committee later giving its support.

Bipartisan Support for Combating Alzheimer’s Disease

Ahead of the Senate floor vote, U.S. Senator Roy Blunt (Mo.), chairman of the Appropriations Subcommittee on Labor-HHS, called for increased federal dollars to invest in research to find a prevention and cure for Alzheimer’s disease. “Treating those with Alzheimer’s costs taxpayers $21 million every hour and, without a treatment or cure, will top $1.1 trillion by 2050 – about twice as much as the annual defense budget,” the Senator calculated.

Blunt warned his Senate colleagues that the nation must get serious with confronting the Alzheimer’s epidemic and finding a cure through research. The Senator stated: “Every hour, Alzheimer’s disease costs taxpayers at least $21 million. Every single hour. Someone in the United States is developing Alzheimer’s every 65 seconds,” noting that $277 billion in tax dollars are spent a year on Alzheimer’s and dementia-related care. It’s hard to talk about this without giving numbers, but numbers are not the most riveting thing, particularly when you talk about millions, or billions, or even trillions.

“What does that really mean? That really means that we’re spending basically an amount equal to half of the defense budget on Alzheimer’s and dementia-related care. Just the overwhelming impact of that, if we don’t do something differently than we’re doing right now, just because of the projected long life and demographics of the country, in 2050, which is 32 years from now, we’ll be spending, in today’s dollars, $1.1 trillion on Alzheimer’s and dementia care. $ 1.1 trillion… That’s twice the defense budget of last year, twice the defense budget. …,” says Blunt

“If we could just delay onset of Alzheimer’s, if we could figure out how to come up with something that would slow down the onset of that disease. If we could delay onset by an average of five years, we’d cut that $1.1 trillion by 42 percent, almost in half. If we could have the average person that gets Alzheimer’s, get it five years later than they are getting Alzheimer’s today, almost half, 42 percent of that $1.1 trillion would go away,” said Blunt.

Greater Investment in Alzheimer’s Funding Still Needed

With the Senate appropriations bill pumping more federal dollars into Alzheimer’s research, UsAgainstAlzheimer’s Chairman George Vradenburg issued a statement
saying: “We believe that Alzheimer’s is the second inconvenient truth of the 21st century. Alzheimer’s is the century’s most fearsome — and inevitable — health and social economic threat to the baby boom and future generations, including, in particular, to women and communities of color. Even with this strong commitment from the Senate, greater investment is still needed if we are to deliver meaningful progress in care and treatment to the six million Americans, 50 million globally, living with this disease and their more than 16 million caregivers. In addition to supporting research, we must elevate brain health as an important part of the path to a cure through regular primary care physician assessments of cognitive health — and early and accurate diagnosis of the cause of any cognitive impairment. The Concentrating on High-value Alzheimer’s Needs to Get to an End (CHANGE) Act, comprehensive legislation aimed at overcoming barriers to a faster cure for Alzheimer’s disease, does just that and we urge Congress to pass the CHANGE Act immediately.”

The Chicago-based Alzheimer’s Association and the Alzheimer’s Impact Movement (AIM) also applauded the Senate’s 2019 spending bill that puts more money into Alzheimer’s research. “Every 65 seconds someone in the U.S. develops the disease,” said Harry Johns, Alzheimer’s Association and Alzheimer’s Impact Movement (AIM) President and CEO. “But, thanks to increased NIH funding American scientists are now advancing basic disease knowledge, ways to reduce risk, new biomarkers for early diagnosis and drug targeting, and developing the needed treatments to move to clinical testing,” he says.

The Senate appropriations bill now goes to conference negotiations with the House and must be signed into law by President Donald Trump. The 2019 Fiscal Year begins October. 1.

With the securing of a total of $30,000 in grants, Lt. Governor Dan McKee officially begins Rhode Island’s effort to update its state’s five-year plan on Alzheimer’s Disease and Related Disorders to combat the rapidly increasing incidence of Alzheimer’s disease.

When announcing the successful fundraising effort, McKee noted that Rhode Island has been in the forefront of Alzheimer’s research. “Each day, we make great strides in expanding clinical trials and innovating treatments. Over the last few years alone, the local landscape of prevention and treatment has changed dramatically and positively. The updated State Plan will be an invaluable tool for local leaders, researchers, physicians, advocates and families as we work together to build the momentum in the fight against Alzheimer’s,” he said.

That day, Donna McGowan, Executive Director of the Alzheimer’s Association, Rhode Island Chapter, warned “We face an emerging crisis with the prevalence of Alzheimer’s disease projected to increase to as many as 27,000 Rhode Islanders by 2025. Alzheimer’s disease is a pivotal public health issue that Rhode Island’s policymakers cannot ignore. With the rapidly growing and changing extent of the Alzheimer’s crisis, it is essential that Rhode Island’s State Plan becomes a living document that stakeholders regularly consult and re-evaluate. We will continue to work diligently to ensure that the vision of our state’s Alzheimer’s Disease Plan is translated into actual public policy.”

Consultants Bring Content Expertise to Project

With two $15,000 grants provided by the Rhode Island Foundation and Tufts Health Plan Foundation, the Alzheimer’s Association, Rhode Island Chapter, as fiscal agent, released a request for proposal (RFP) for a consultant who would bring writing skills, expertise in public policy initiatives to provide programs and services to persons with Alzheimer’s disease, to the project.

Five consultants responded to the RFP and after a month long-search and a series of interviews, Michael Splaine and Kate Gordon, of Splaine Consulting, a small advocacy and government affairs consulting firm based in Columbia, Maryland, got the contract. No question, Splaine and Gordon brought the right blend of skills to the project. The consultants have provided content matter expertise to over two dozen State Alzheimer’s Plans.

Immediately prior to starting this company eight years ago, Splaine served as Director of State Government Affairs in the Public Policy Division of the Alzheimer’s Association for over 23 years, leading its grassroots network to accomplish state policy priorities, including persuading states to develop comprehensive state Alzheimer Plans in 2007-2008.

While at the Association he was a staff team member for the Association’s Early Stage Initiative (a program working to promote inclusion and programs for persons with Alzheimer’s.) and provided leadership in the Association on the government affairs aspects of the Healthy Brain Initiative, a cooperative agreement with the U.S. Centers for Disease Control, and Prevention continues this work as a consultant to the Association.

Kate Gordon, who has worked with Splaine for over 18 years, has a reputation for being a skilled health policy analyst and grassroots advocacy strategist. She brings expertise in a diverse range of health and long-term care issues topics, including federal and state policies affecting persons with dementia, caregiver interventions, and direct care worker training. Her previous work includes assisting in the development of the first United States National Alzheimer’s Plan and 18 state government Alzheimer’s disease plans.

Gordon was also awarded the prestigious 2013 HHSinnovates People’s Choice and Secretary’s Choice award winner for “Connecting to Combat Alzheimer’s.”

“Kate and I have worked with every level of government from local to global that is taking on the challenge of Alzheimer’s disease, including regionally and globally with the World Health Organization,” explains Splaine. The company’s long listing of clients includes the Alzheimer’s Association in their public health work with Center for Disease Control and Prevention (CDC), Alzheimer’s Disease International, the umbrella organization for over 90 national organizations devoted to persons with dementia, and overtime Splaine Consulting has also worked with the national center on elder abuse, Consumer Voice, Arthritis Foundation to name just a few.

The path that led Splaine Consulting to being chosen to update Rhode Island’s Alzheimer’s Plan may seem ironic to some, says Splaine, because it has most certainly brought him back home. He started his early professional life in the Ocean State, graduating Rhode Island College with a gerontology certificate, even having been married to a native Bristol resident for 41 years.

“My earliest work with people with cognitive impairment included volunteer teaching for Fr. (now Msgr.) Gerry Sabourin who was developing what was then called a special religious ed program and my field placement for Rhode Island College at two different adult day care centers,” says Splaine.

“I am thrilled to welcome Splaine Consulting to our team as we relaunch Rhode Island’s coordinated effort to fight Alzheimer’s disease and provide patients with the highest level of support and care,” said McKee. “Rhode Island is a leader in Alzheimer’s research and treatment but knowing how other states are addressing this devastating disease is essential to our success. Splaine’s experience in crafting other State Plans and their thorough understanding of the national landscape make Michael and Kate valuable partners.”

Combatting the Alzheimer’s Epidemic

The update of the State’s initial five-year Alzheimer’s Plan approved by the Rhode Island General Assembly in 2013, is a collaborative effort of the Rhode Island chapter of the Alzheimer’s Association, the Division of Elderly Affairs and the Office of the Lt. Governor. The final plan will provide state lawmakers, municipalities and the state’s health care system with a policy strategy to confront the anticipated Alzheimer’s epidemic. It will also take a look at the current impact of Alzheimer’s disease on a growing number of Rhode Islanders and most importantly, details the steps the state must take (legislatively and regulatory) to improve programs and services for people with Alzheimer’s and their family caregivers.

Once the updated report is completed and approved by the Rhode Island General Assembly, the state’s Long-Term Care Coordinating Council’s Executive Board will seek legislative and regulatory changes to carry out its recommendations to ensure that it is more than just a document—that it comes to shape the state’s public policies on Alzheimer’s.

The updated report must be completed by October 31, after which there will be a follow up survey to all stakeholders in the process to see “how we did at capturing their ideas,” says Splaine.

Now, Splaine and Gordon begin their analytical review work of reviewing the existing Alzheimer’s Disease Plan, contacting key state agencies for their input, and planning formal interviews over the next 6 weeks with key persons from care, research, academia, and persons with dementia and family caregivers.

Community input is crucial, says Splaine. “Through the Long-Term Care Coordinating Council’s Executive Board under the leadership of the Lt. Governor, caregiver subcommittee we have a survey out [to solicit comments] that will stay open through the end of August that will be available online and offline, he says. Kicking off on August 5 and concluding August 10, 18 community town meetings are scheduled to allow Rhode Islanders to give their thoughts as to what should be included in the updated State Alzheimer’s Plan.

For the second consecutive year, total payments to care for individuals with Alzheimer’s or other dementias will surpass $277 billion, which includes an increase of nearly $20 billion from last year, according to data reported in the Alzheimer’s Association 2018 Alzheimer’s Disease Facts and Figures report recently released last Tuesday.

According to the Alzheimer’s Association, the annual report, first released in 2007, is a compilation of state and national specific statistics and information detailing the impact of Alzheimer’s disease and related dementias on individuals, families, state and federal government and the nation’s health care system.

“This year’s report illuminates the growing cost and impact of Alzheimer’s on the nation’s health care system, and also points to the growing financial, physical and emotional toll on families facing this disease,” said Keith Fargo, Ph.D., director of scientific programs and outreach for the Alzheimer’s Association, in a statement. “Soaring prevalence, rising mortality rates and lack of an effective treatment all lead to enormous costs to society. Alzheimer’s is a burden that’s only going to get worse. We must continue to attack Alzheimer’s through a multidimensional approach that advances research while also improving support for people with the disease and their caregivers,” he said.

Adds Fargo, “Discoveries in science mean fewer people are dying at an early age from heart disease, cancer and other diseases,” said Fargo. “Similar scientific breakthroughs are needed for Alzheimer’s disease, and will only be achieved by making it a national health care priority and increasing funding for research that can one day lead to early detection, better treatments and ultimately a cure.”
2018 Alzheimer’s Facts and Figures

New findings from the 88-page report on March 20, 2017 reveal the growing burden on 16.3 million caregivers providing 18.4 billion hours of care valued at over $ 232 billion to 5.7 million people with the devastating mental disorder. By 2050, the report projects that the number of persons with Alzheimer’s and other dementias will rise to nearly 14 million, with the total cost of care skyrocketing to more than $1.1 trillion.

Between 2000 and 2015 deaths from health disease nationwide decreased by 11 percent but deaths from Alzheimer’s disease have increased by 123 percent, says the new data in the report, noting that one out of three seniors dies with Alzheimer’s or another dementia. It even kills more than breast cancer and prostate cancer combined. In Rhode Island in 2015, the number of deaths from Alzheimer’s disease was 453, making the devastating brain disorder the 5th leading cause of death in the state.

In 2017, 53,000 Rhode Island caregivers provided an estimated 61 million hours of unpaid physical and emotional care and financial support – a contribution to the nation valued at $768 million dollars. The difficulties associated with providing this level of care are estimated to have resulted in $45 million in additional healthcare costs for Alzheimer’s and other dementia caregivers in 2017.

State Updates Battle Plan Against Alzheimer’s Disease

“The Alzheimer’s Association’s most recent report about Alzheimer’s Disease in Rhode Island illustrates the need to take swift action in updating our State Plan to ensure Rhode Island is prepared to provide the necessary resources to families, caregivers and patients who are struggling with the disease,” says Lt. Governor McKee,

McKee adds that the updated State Plan will be a blueprint for how Rhode Island will continue to address the growing Alzheimer’s crisis. “It will create the infrastructure necessary to build programs and services for the growing number of Rhode Islanders with the disease. The updated Plan will also outline steps the state must take to improve services for people with Alzheimer’s and their families. After the update is complete, my Alzheimer’s Executive Board will seek legislative and regulatory changes to carry out the recommendations of the Plan and ensure that it is more than just a document,” he says.

“One of the many types of caregivers benefiting from AARP’s caregiving advocacy in Rhode Island are family members who care for those with Alzheimer’s,” said AARP Rhode Island State Director Kathleen Connell. “They are among the army of 10 million wives, husbands, sons and daughters nationwide. The majority are women and according to researchers, especially when it comes to dementia and Alzheimer’s care. Approximately 40 percent of those caregivers say they have no other options or choices, and a third say they provide care 24/7.

“The latest report indicates what we already know,” Connell added. “This will continue to be rising challenge in Rhode Island as our population ages. The disease will place more stress on our Medicaid-funded nursing home capacity, which should make this a concern for taxpayers. There is a strong case for increasing research funding so that someday we may reverse the tide.

“Our Web site, http://www.aarp.org, provides abundant resources for these dedicated caregivers. AARP in states across the nation, including Rhode Island, have worked to pass legislation that provides paid respite for caregivers who have jobs as well as caregiving obligations. We have supported the Alzheimer’s Association here in Rhode Island for many years and, last year, a small team of AARP volunteers participated in the Alzheimer’s Walk. Joined by others, they are gearing up for this year’s walk.”

Increased Research Funding Needed Now

Donna McGowan, Alzheimer’s Association, RI Chapter Executive Director, says that the 2018 Alzheimer’s Disease Facts and Figures report should send a very clear message that Alzheimer’s disease is an issue that policy makers cannot ignore. “This is an urgent public health crisis that must be addressed. Early detection and diagnosis of the disease leads to better planning, avoiding preventable hospitalizations, and over all a better quality of life for the patient and the caregiver,” says McGowan.

McGowan warns that the health care system is not ready to handle the increased cost and number of individuals expected to develop Alzheimer’s disease in the coming years. “With a vigorous National Plan in place to address the Alzheimer’s crisis, and annual budget guidance for Congress, it is essential that the federal government continue its commitment to the fight against Alzheimer’s by increasing funding for Alzheimer’s research,” adds McGowan.

Rhode Island Congressman David Cicilline sees the need for increased funding for direct services for those afflicted with Alzheimer’s disease. He voted for H.R.1625, the omnibus spending bill that increases funding for the National Institute of Health’s Alzheimer’s research by $414 million. And two years ago, Cicilline worked to pass H.R.1559, “The HOPE for Alzheimer’s Act,” which President Obama signed into law to expand Medicare coverage for Alzheimer’s treatment.

If Cicilline succeeds to get the Republican-controlled Congress to have a vote on H.Res.160, his bill to reestablish the House Select Committee on Aging, it will allow House lawmakers to hear expert testimony and make new policy recommendations to improve the delivery of care to those afflicted with Alzheimer’s and to assist caregivers, too.

With the dust finally settling after the heated partisan battles over the dismantling President Obama’s landmark Obamacare and later reforming the nation’s tax code, Congressional Democrats and Republicans put political and philosophical differences aside to overwhelming pass by voice vote the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act of 2017.

The RAISE Family Caregivers Act of 2017, introduced in the U.S. Senate by Senators Susan Collins (R-ME) and Tammy Baldwin (D-WI), was passed on January 8, 2017. Two months earlier a House companion measure (H.R. 3759), introduced by Reps. Gregg Harper (R-MS) and Kathy Castor (D-FL), was passed. At press time, the legislation now heads to the President’s desk to be signed into law.

The caregiver legislation would direct the U.S. Secretary of Health and Human Services to develop and sustain a strategy to recognize and support family caregivers across the nation. This bipartisan legislation has been endorsed by more than 60 aging and disability organizations, including AARP, the Alzheimer’s Association, the National Committee to Preserve Social Security and Medicare, the Elizabeth Dole Foundation, the Michael J. Fox Foundation, and the Arc.

Universal Praise for Congressional Passage

Congress clearly understands that caregiving is not a partisan issue but a life experience for millions of Americans.Yes, everyone at some time in their life may take on the role of caregiver for parents, spouses, children and adults with disabilities, or personally know caregivers.

According to AARP’s Public Policy Institute, there are 40 million family caregivers in the United States who provided an estimated $470 billion in uncompensated long-term care in 2013. In the Ocean State at any time during the year, an estimated 134,000 Rhode Island family caregiver step up to provide 124 million hours of care for an aging parent or loved one, most often helping them to live independently in their own homes.

“Family caregivers play an essential role in our communities by dedicating time and attention and making countless personal and financial sacrifices to care for their loved ones,” said Sen. Collins upon the Senate bills passage. “I am delighted that our bipartisan legislation to develop a coordinated strategic plan to leverage our resources, promote best practices, and expand services and training available to caregivers will now become law,” adds the Maine Senator, who chairs the Senate Special Committee on Aging.

Senator Sheldon Whitehouse sees the value of the RAISE Family Caregivers and its impact to Rhode Island caregivers. “The passage of the bipartisan RAISE Family Caregivers Act is an important first step toward easing the burden on the caregivers who mean the world to the family members they care for.” says the Rhode Island Senator who serves on the Senate Special Committee on Aging.

“Family caregivers play a key role in supporting their loved ones in Rhode Island and throughout the nation. adds Democratic Policy and Communications Committee Co-Chair David N. Cicilline. “The RAISE Family Caregivers Act ensures that family caregivers have the support and the resources they need to do their jobs safely and effectively. As a co-sponsor of H.R. 3759, I made sure my colleagues understood that this bill needed to become law as soon as possible, and I am glad that it passed both Chambers without objection. Now I urge President Trump to sign it and allow this important law to take effect”

“Thanks to the efforts of bipartisan Senate and House champions—Senators Collins and Baldwin and Representatives Harper and Castor—the RAISE Family Caregivers Act will help address the challenges family caregivers face,” said AARP Chief Advocacy & Engagement Officer Nancy A. LeaMond, in a statement. “Family caregivers are the backbone of our care system in America. We need to make it easier for them to coordinate care for their loved ones, get information and resources, and take a break so they can rest and recharge,” she says.

According to LeaMond, family caregivers take on a range of tasks including managing medications, helping with bathing and dressing, preparing and feeding meals, arranging transportation, and handling financial and legal matters. She estimates that the unpaid care that family caregivers provide helps delay or prevent costly nursing home care, which is often paid for by Medicaid.

What’s in the RAISE Family Caregiver Act?

The RAISE Family Caregivers Act directs the Secretary of Health and Human Services to develop and update a national strategy to support family caregivers. The legislation would also create a Family Caregiving Advisory Council comprised of relevant Federal agencies and non-federal members, also including family caregivers, older adults with long-term care needs, individuals with disabilities, employers, health and social service providers, advocacy organizations engaged in family caregiving, state and local officials, and others with expertise in family caregiving.

The newly established Advisory Council (meetings open to the public) would be charged with making recommendations to the Secretary. The strategy would be updated to reflect new developments. The Advisory Council’s initial report would include an initial inventory and assessment of federally funded caregiver efforts that would be incorporated into the initial strategy. The strategy would then identify recommended actions that government, providers, communities, and others could take to support family caregivers.

The development of the initial strategy would take up to 18 months, followed by updates of the strategy biennially. The bill would improve the collection and sharing of information, including information related to evidence-based or promising practices and innovative models regarding family caregiving; better coordinate, assess, maximize the effectiveness, and avoid unnecessary duplication of existing federal government activities to recognize and support family caregivers. The strategy and work around it could help support and inform state and local efforts to support family caregivers, promoting greater adoption of person- and family-centered care in all health and Long-Term Service and Support (LTSS) settings, with the person and the family caregiver (as appropriate) at the center of care teams

In addition to requiring the development of a strategy to support the nation’s family caregivers, the bill also establishes an advisory body that will bring together stakeholders from the private and public sectors to make recommendations that communities, providers, government, and others are taking and may take to help make the big responsibilities of caregiving a little bit easier.

The activities under the bill would be funded from existing funding appropriated for the Department of Health and Human Services. No new funding is authorized and it would sunset in five years.

Calls for More Caregiver Assistance

“In Rhode Island, we’re working hard at staying ahead on legislation supporting caregivers,” said AARP Rhode Island State Director Kathleen Connell. “We passed temporary caregiver insurance, which covers thousands of working caregivers with salary protection much like TDI (Temporary Disability Insurance). Earned-paid sick leave fills in a gap that caregiver TDI may not cover in emergency situations. The AARP-back CARE Act now requires hospitals, upon admitting patients, identify a designated caregiver, inform that person on discharge and provide training for at-home medical tasks. We have passed legislation making it easier for caregivers to modify their homes. And just this month, the state opened applications for a grant program we fought for in the current budget that provides up to $5,000 in hard cash for caregivers who make qualifying home improvements.” (Download a grant application at http://www.aarp.org/ricaregiving)

“We cannot stop here,” added Connell. “And the RAISE Act keeps the need for ongoing strategic planning and smart policymaking on the front burner. The numbers demand escalating action that will improve conditions not just for people who need care, but their family caregivers as well. But it is very important to emphasize that all taxpayers benefit when someone with chronic illness or aging disabilities can stay in their homes, rather than move into Medicaid-supported nursing homes. We all win when we support caregivers.”

NOTE: “The Rhode Island Chapter of the Alzheimer’s Association has a commitment to assisting caregivers navigate the various challenges of caring for someone living with Alzheimer’s and other related dementias,” says Donna McGowan, Executive Director of the Alzheimer’s Association, RI Chapter. Call 1-800-272-3900 for details about caregiver and provider services (including confidential support, information, and referrals to local resources via access to a 24/7 Helpline, care consultation, caregiver support groups, education programs for families, and online information (www.alz.org/ri ).

Editor’s Note: Four months after S. 1028, titled the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act, was introduced in the Senate, an updated House companion bill (H.R. 3759) gets dropped into the chamber’s legislative hopper. On September 13, Reps. Gregg Harper (R-MS) and Kathy Castor (D-FL) along with original cosponsors Reps Michelle Lujan Grisham (D-NM) and Elise Stefanik (R-NY) introduced the legislation that calls for the development of a strategy to support family caregivers. It was referred to House Committee on Education and the Workforce. At press time, Rep. David Cicilline (D-RI) will shortly become a cosponsor of H.R. 3759.

On May 3, Sens. Susan Collins (R-ME), the Chairman of Senate Aging Committee, and Tammy Baldwin (D-WI) reintroduced the RAISE Family Caregivers Act, with Sens. Lisa Murkowski (R-AK) Michael Bennet (D-CO) signing on as cosponsors. At press time, there are now 12 cosponsors. Sen. Collins and Baldwin and Reps. Harper and Castor first introduced the family caregiver legislation in July 2015, and it passed the Senate unanimously in December 2015.

Eight days later the Senate Health, Education, Labor and Pensions Committee unanimously passed this legislation by a voice vote later that month and the bipartisan legislation will now be considered by the full Senate.

The Nuts and Bolts

The House bill introduced this week is updated from the Senate version introduced in early May. That Senate version is almost identical to the Senate-passed version from 2015.

The RAISE Family Caregivers Act directs the Secretary of Health and Human Services to develop and update a national strategy to support family caregivers. The legislation would also create a Family Caregiving Advisory Council comprised of relevant Federal agencies and non-federal members, also including family caregivers, older adults with long-term care needs, individuals with disabilities, employers, health and social service providers, advocacy organizations engaged in family caregiving, state and local officials, and others with expertise in family caregiving.

The newly established Advisory Council would be charged with making recommendations to the Secretary. The strategy would be updated to reflect new
developments. The Advisory Council’s initial report would include an initial inventory and assessment of federally funded caregiver efforts that would be incorporated into the initial strategy. The strategy would then identify recommended actions that government, providers, communities, and others could take to support family caregivers.

The activities under the bill would be funded from existing funding appropriated for the Department of Health and Human Services. No new funding is
authorized and it would sunset in five years.

This bipartisan caregiver legislation has been endorsed by over 60 aging and disability organizations, including the AARP, the Alzheimer’s Association, the w Michael J. Fox Foundation and the Arc.

Shouldering Caregiver Burdens

“Every day, more than 40 million ordinary Americans take on the challenge of caring for parents, spouses, children and adults with disabilities, and other loved ones so they can live independently at home and in their communities,” says AARP Chief Advocacy & Engagement Officer Nancy A. LeaMond. “The RAISE Family Caregivers Act is a commonsense, bipartisan step to recognize and support our nation’s family caregivers. AARP appreciates the leadership of Representatives Harper and Castor, and we urge Congress to pass this important piece of legislation,” she notes.

According to LeaMond, the nation’s family caregivers assist loved ones with eating, bathing, dressing, transportation, medical tasks, managing finances, and more. Many do this while working full time and raising families. The unpaid care family caregivers provide—37 billion hours valued at about $470 billion annually—helps delay or prevent more costly care and unnecessary hospitalizations, saving taxpayer dollars.

“Caregiving is, in one way or another, now an inevitable part of everyone’s future,” said AARP Rhode Island State Director Kathleen Connell. “It has been said that if you ask people about caregiving they fall into one of three or more categories: They know a caregiver, they are a caregiver or they will require a caregiver. AARP works hard at the state and federal level to direct resources and support to family caregivers. In Rhode Island, we have fought successfully for temporary caregiver insurance (TCI), the CARE Act, accessory dwelling unit legislation and a new fund to help offset the cost of ‘livable’ home improvements that benefit caregiving and make aging in place easier.”

“In the upcoming special session of the General Assembly, another key caregiving bill will be before lawmakers,” Connell added. “Earned Paid Sick Leave will be especially helpful to working family caregivers whose employers do not offer paid time off. Temporary caregiver insurance requires several days advanced notice. That can be helpful, for example, if a family member has a scheduled test or medical procedure. Earned paid sick leave would allow employees to used paid sick time when they are called away to attend to immediate emergencies.”

“The RAISE Family Caregivers Act is intended to provide a policy framework for improving caregiver support from national level down to states, cities and towns. In short, where the caregiver rubber meets the road,” Connell said.
Caregiver Legislative Proposal a Bipartisan Issue

According to AARP’s Public Policy Institute, there are 40 million family caregivers in the United States who provided an estimated $470 billion in uncompensated long-term care in 2013. In the Ocean State at any time during the year, an estimated 134,000 Rhode Island family caregivers step up to provide 124 million hours of care for an aging parent or loved one, most often helping them to live independently in their own homes.

With many caregivers putting their own health at risk, experiencing experience high-levels of stress and have a greater incidence of chronic conditions like heart disease, cancer, and depression, these individuals need the support and assistance that the enactment of the RAISE Family Caregivers Act could help bring about. Both sides of the aisle must put their political differences aside and push for passage. Both Republicans and Democrats shoulder caregiving duties.

Quickly passing the RAISE Family Caregivers Act in the Senate and House and sending it to the desk of President Donald Trump for his signature is the right thing to do.

While Congress and states are nation grappling with how to put the brakes to one of the largest public health crises in recent times, the escalating Alzheimer’s disease (AD) epidemic, the Chicago-based Alzheimer’s Association releases its annual snap shot detailing statistics on the impact of Alzheimer’s and dementia on caregivers and health care costs..

According to the 2016 Alzheimer’s disease Facts and Figures, released on March 30, 2016, this year nearly 16 million Alzheimer’s caregivers will provide 18 billion hours of unpaid care to 5.4 million afflicted with this devastating disorder. That care had an estimated value of $221.3 billion, says the report.

But that’s not all, this recently released report notes that two out of three people believe that Medicare will help them over costly nursing facility costs. Sorry it won’t. AD also has a direct impact on a caregiver’s pocketbook, too, the researchers found. More than one-third of those surveyed say they were forced by caregiving duties to reduce their hours at work or just quit their job entirely. As a result of these actions their income dropped by $15,000 compared to the previous year. Eleven percent of caregivers were forced to cut back on spending for their children’s education in order to provide support.

The 79 page Alzheimer’s Association report notes that both physical, emotional and financial support required by a person with AD may ultimately deprive family and friend care givers basic necessities, such as food, transportation and medical care. The Facts and Figures report reveals that these caregivers were 28 percent more likely to eat less or go hungry while contributing care to someone with AD, and one-fifth even sacrificed their own medical care by cutting back on doctor visits. Overall, nearly half of the caregivers say they cut back on their own expenses to afford dementia-related care for their family member or friend.

“The devastating emotional and physical effects of caring for a person with Alzheimer’s disease has been well-studied,” said Beth Kallmyer, MSW, Vice President of Constituent Services for the Alzheimer’s Association. “However, this new report shows, for the first time, the enormous personal financial sacrifices that millions of care contributors must make every day. These sacrifices jeopardize the financial security of individuals and families, as well as their access to basic needs and health care.”

This year’s Facts and Figures report found that 13 percent of family or friend caregivers sold personal belongings, such as a car, to help pay for costs related to dementia, while nearly half tapped into savings or retirement funds. On average, caregivers, many of whom do not live with the person they’re caring for, spent more than $5,000 a year of their own money to care for someone with AD; however, amounts varied with many spending tens of thousands of dollars per year.
Incidents of AD is Fast Growing

The Facts and Figures report says that out of the 5.4 million (of all ages) afflicted with AD, an estimated 5.2 million are age 65 and over. Yes, one in nine people having the cognitive disorder. Approximately 200,000, having early onset AD, are under age 65.

Also, the recently released Facts and Figures report warns that we are truly in the midst of an AD epidemic as the baby boomers grow older. By 2050, researchers say that someone in the United States will develop AD every 33 seconds. Without a medical breakthroughs to prevent or cure, the age 65 and over population with AD, the incidence is expected to nearly triple, from 5.2 million to a projected 13.8 million. Some say may be even as high as 16 million. It’s the only disease among the top 10 causes of death in America that cannot be prevented, cured or even slowed. .

Additionally, this year’s Facts and Figure report notes that AD is officially listed as the sixth-leading cause of death in this country. It is the fifth-leading cause of death for people age 65 and older. With the graying of America, AD will become a more common cause of death. At age 70, 61 percent of those with AD are expected to die before the age of 80 compared with 30 percent of people without the cognitive disorder — a rate twice as high, says the report.

The Typical Care Giver

The Facts and Figures report puts the face on a typical caregiver. Approximately two-thirds of caregivers are women, and 34 percent are age 65 or older. Forty one percent have a household income of $50,000 or less.

AD takes a devastating toll on the health of caregivers, says the Facts and Figures report. Nearly 60 percent of those taking care of loved ones with Alzheimer’s and dementia report that their emotional stress being high or very high. About 40 percent suffer from depression. One in five care givers cut back on their own physician visits because of their caregiving responsibilities. And, among caregivers, 74 percent report they are “somewhat” to “very” concerned about maintaining their own health since becoming a caregiver.

A Huge Cost on the Health Care System

The report’s researchers warn that the AD epidemic might just bankrupt the nation’s Medicare program. In 2016, total payments for health care, long-term care and hospice are estimated to be $236 billion for people with Alzheimer’s and other dementias, with just under half of the costs paid by Medicare. Nearly one in every five Medicare dollars is spent on people with Alzheimer’s and other dementias. In 2050, it will be one in every three dollars

Medicare and Medicaid are expected to cover $160 billion, or 68 percent, of the total health care and long-term care payments for people with Alzheimer’s disease and other dementias.

Seeing a huge rise in AD over the last two years, federal and state officials are gearing up to strategize a battle to fight the impending epidemic.

A Call to Action

Yes, the AD epidemic is here, right in Rhode Island. Everyone is personally touched by either caring for a family member with the cognitive disorder or knows someone who is a caregiver or afflicted.

Following the efforts of Congress to create a national strategic plan to address the rapidly escalating AD crisis and to coordinate resources across federal agencies, the Rhode Island General Assembly passed a joint resolution enacted into law to direct the Lt. Governor’s Long Term Care Coordinating Council (LTCCC) to be the vehicle to develop a state plan to address this growing public health crisis in the Ocean State. Ultimately, for over a year former Lt. Governor Elizabeth Roberts along with LTCCC members, former Division of Elderly Affairs Director Catherine Taylor, the state Chapter of the Alzheimer’s Association, universities and health care organizations with the public input gleaned from 8 listening events hammered out the 122 page battle plan with over 30 pages of recommendations.

In 2016, Lt. Governor Daniel J. McKee has picked up the ball and convened a meeting of the Executive Board on Alzheimer’s Disease and Related Disorders, consisting of researchers, advocates, clinicians and caregivers, to begin efforts to implement recommendations from the State’s Alzheimer’s Plan. The group will determine which recommendations are outdated.

With a rising population of Rhode Islander’s with AD, state policy makers must act swiftly and lose no more time in addressing this terrible disease and public health issue.

According to the Alzheimer’s Association 2014 Alzheimer’s disease Facts and Figures report released last Month, a woman’s estimated lifetime risk of developing Alzheimer’s at age 65 is 1 in 6, compared with nearly 1 in 11 for a man. As real a concern as breast cancer is to women’s health, women age 60 and over are about twice as likely to develop Alzheimer’s over the rest of their lives as they are to develop breast cancer, says the this years’ report.

The Facts and Figures report, an official report of the Alzheimer’s Association, the world’s leading voluntary health organization in Alzheimer’s care, support and research, is a comprehensive compilation of national statistics and information on Alzheimer’s disease and related dementias. The 75 page report conveys the impact of Alzheimer’s on individuals, families, government and the nation’s health care system. Since its 2007 inaugural release, the detailed report has become the most cited source covering the broad spectrum of Alzheimer’s issues.

“Through our role in the development of The Shriver Report: A Woman’s Nation Takes on Alzheimer’s in 2010, in conjunction with Maria Shriver, we know that women are the epicenter of Alzheimer’s disease, representing majority of both people with the disease and Alzheimer’s caregivers. The recently released Alzheimer’s Association Facts and Figures examines the impact of this unbalanced burden,” said Angela Geiger, chief strategy officer of the Alzheimer’s Association. “Well-deserved investments in breast cancer and other leading causes of death such as heart disease, stroke and HIV/AIDS have resulted in substantial decreases in death. Geiger calls for comparable investments in research to reach the same levels of successfully preventing and treating Alzheimer’s as the other leading causes of death.

Adding to women’s Alzheimer’s burden, there are 2.5 times as many women as men providing intensive “on- duty” care 24 hours for someone living with Alzheimer’s disease, says the report, also noting that among caregivers who feel isolated, women are much more likely than men to link isolation with feeling depressed (17 percent of women verse. 2 percent of men).

Also noted in the 2014 Alzheimer’s’ Facts and Figures report released on March 19, 2014, the strain of caring for someone with Alzheimer’s is also felt in the nation’s workplace, too. Among caregivers who have been employed while they were also care giving, 20 percent of women verse. 3 percent of men went from working full-time to working part-time while acting as a caregiver. The report also noted that 18 percent of women versus. 11 percent of men took a leave of absence while 11 percent of women verses 5 percent of men gave up work entirely. Finally, 10 percent of women verse 5 percent of men lost job benefits.

Far Reaching Fiscal Human Impact of Alzheimer’s

Meanwhile the Alzheimer’s Association Facts and Figures report noted that there are more than 5 million Americans living with this devastating disorder, including 3.2 million women and 200,000 people under the age of 65 with younger-onset Alzheimer’s disease (see my May 9, 2013 Commentary). However, Alzheimer’s has far-reaching effects by impacting entire families. Also, it was reported that there are currently 15.5 million caregivers providing 17.7 billion hours of unpaid care throughout the nation, often severely impacting their own health. The physical and emotional impact of dementia care giving resulted in an estimated $9.3 billion in increased healthcare costs for Alzheimer’s caregivers in 2013.

The total national cost of caring for people with Alzheimer’s and other dementias is projected to reach $214 billion this year, says the 2014 Facts and Figures report, not including unpaid care giving by family and friends valued at more than $220 billion. In 2014, the cost to Medicare and Medicaid of caring for those with Alzheimer’s and other dementias will reach a combined $150 billion with Medicare spending nearly $1 in every $5 on people with Alzheimer’s or another dementia.

The Facts and Figures report predicts the cost numbers to soar as the baby boomers continue to enter the age of greatest risk for Alzheimer’s disease. Unless something is done to change the course of the devastating disorder, there could be as many as 16 million Americans living with Alzheimer’s in 2050, at a cost of $1.2 trillion (in current dollars) to the nation. This dramatic rise includes a 500 percent increase in combined Medicare and Medicaid spending and a 400 percent increase in out-of-pocket spending.

The country’s first-ever National Plan to Address Alzheimer’s disease has a goal of preventing and effectively treating Alzheimer’s disease by 2025. Ensuring strong implementation of the National Alzheimer’s Plan, including adequately funding Alzheimer’s research, is the best way to avoid these staggering human and financial tolls.

Lack of Understanding of the Alzheimer’s’ Disease

“Despite being the nation’s biggest health threat, Alzheimer’s disease is still largely misunderstood. Everyone with a brain — male or female, family history or not — is at risk for Alzheimer’s,” said Geiger. “Age is the greatest risk factor for Alzheimer’s, and America is aging. As a nation, we must band together to protect our greatest asset, our brains.”

In 2010, the Alzheimer’s Association in partnership with Maria Shriver and The Shriver Report conducted a groundbreaking poll with the goal of exploring the compelling connection between Alzheimer’s disease and women. Data from that poll were published in The Shriver Report: A Woman’s Nation Takes on Alzheimer’s, which also included essays and reflections that gave personal perspectives to the poll’s numbers. For the first time, that report revealed not only the striking impact of the disease on individual lives, but also its especially strong effects on women — women living with the disease, as well as women who are caregivers, relatives, friends and loved ones of those directly affected.

Realizing the impact Alzheimer’s has on women — and the impact women can have when they work together — the Alzheimer’s Association is launching a national initiative this spring highlighting the power of women in the fight against this disease. To join the movement, visit http://www.alz.org/mybrain.

Maureen Maigret, policy consultant for the Senior Agenda Coalition of Rhode Island and Coordinator of the Rhode Island Older Woman’s Policy Group, concurs with the findings of the Alzheimer’s disease Facts and Figures report. She calls for the education of elected officials on the facts about Alzheimer’s disease and its greater prevalence among women. “It is clearly a tragedy for the women effected with the disease, and can be devastating for their caregivers, mostly daughters, trying to keep them at home,” she says.

Maigret says that Alzheimer’s disease and other dementias at the state level have tremendous implications for this state’s budget. “Data show that in Rhode Island, about three-quarters of persons in nursing homes paid for by Medicaid are older women. An overwhelming number of them have some cognitive decline or dementia, she notes.

“We must do more to ensure that quality long-term care is available for persons with dementia and that robust caregiver support services are in place for the many families dealing with parents, spouses and other loved ones suffering from this disease,” says Maigret, stressing that government funding on research must also be greatly increased in the hopes of finding a cure or ways to prevent its onset.

Director Catherine Taylor, of the state’s Division of Elderly Affairs, believes that the Alzheimer’s’ Association’s released 2014 Facts and Figures report, about a woman’s lifetime risk of developing the devastating cognitive disorder verses breast cancer “really help us understand, in stark terms, what a public health crisis Alzheimer’s disease is, especially for women.”

Taylor notes that the Ocean State is in the implementation phase of its State Plan on Alzheimer’s disease and Related Dementias (see my November 13, 2013 commentary), where state officials are working to improve information, care and supports for every family that confronts Alzheimer’s disease. “The work will continue until there’s a cure,” she says.

“It’s important to note that new research findings also indicates that up to half of the cases of Alzheimer’s disease may be linked to risk factors “within our control,” states Taylor, adding that reducing the risk of developing Alzheimer’s disease may be a simple as eating a healthy diet, staying active, learning new skills, and maintaining maintain strong connections with family, friends and community.

For those concerned about their risk of developing Alzheimer’s disease, join Prevent AD, Rhode Island’s Alzheimer’s disease Prevention Registry. Prevent AD volunteers will learn about prevention studies for which they may be qualified to participate in, as well as the latest news on brain health. For more information, call (401) 444-0789.

The full text of the Alzheimer’s Association 2014 Facts and Figures can be viewed at http://www.alz.org/downloads/facts_figures_2014.pdf. The full report also appeared in the March 2014 issue of Alzheimer’s & Dementia: the Journal of the Alzheimer’s Association (Volume 10, Issue 2).

Herb Weiss, LRI ’12, is a Pawtucket-based writer who covers aging, health care and medical issues. He can be reached at hweissri@aol.com.